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The deletion my step-son has is very rare and there isn't really a name for it other than a partial deletion. I am really hopeful that I can get to know some of you. It's always nice to know that you have somewhere to turn when you need some advice. I will sure try to do the same for you ladies :-)

Hi Kris my stepdaughter s a rare chromosome disorder called Super numerary ring chromosome it affects her #5 chromosome she has a extra #5. The last we knew there was only 7 in the world. No one knows anything about it each person that is documaneted to have it all have different issues but some in common. We have recently found out that she 2 microduplications on her long and short arms of the chromsome and that she is only using one of her X chromsomes. She also has atrophy of the central vortex of her brain. The latter two are significant to her behavior. I would reccomend you become a member of Unique and Chromosome Deletion Outreach both are support groups for all types of syndroms and chromsome disorders. They can hook you up with others if they are in their data bases who have a child with the same or similar issues. They also always the latest research and studies available.

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